We need to talk more about vulvas

A “very, very distressing” cancer that nobody talks about. This is how Christchurch gynaecological oncologist Bryony Simcock opened her address on vulval cancer to last year’s NZNO Women’s Health section conference.

February 15, 2016

Vulval (or vulvar) cancer is amongst the rarest of the gynaecological cancers and can occur on any part of women’s external genitalia but most commonly on the labia. Almost half of the women surveyed last year by British gynaecological cancer research fund The Eve Appeal said they’d like to be able to talk more openly about gynaecological health, and 34 per cent said they would feel more comfortable talking about gynaecological health if the sexual stigma was reduced.

Silent suffering

Simcock sees the results of women being too shy or embarrassed to raise the topic of their vulval health. In her presentation last year, she shared the sad tale of an “absolutely delightful” woman in her 70s who presented to hospital as being generally unwell and “off her legs”.

The woman’s husband told hospital staff that he knew something was wrong as she was increasingly housebound and he kept asking her to go to her GP, which she had done several times with minor complaints in the previous few years.

In the first 48 hours after admission the medical team found nothing wrong with her but that she was uncomfortable and had noticed a “funny smell”. On the third day after admission a CT scan was done and they discovered 9cm nodes in her groin.

The woman was sent to Simcock, who examined her and discovered a “huge tumour” replacing the entire perineum, a tumour so large that the poor lady couldn’t sit properly – the cause of her discomfort.

“She had been in hospital for more than 48 hours and nobody had looked below her belly button,” recalls Simcock.

She says the woman was aware that she hadn’t told anybody what was the cause of her discomfort but Simcock also noted that nobody had asked her.

Simcock shared another story of a young woman who had been referred to colposcopy for low-grade cervical smears, but it was several years later that she mentioned that she had also had a vulval itch for four years. On referral to Simcock, the 28-year-old woman was found to have high-grade pre-cancerous cells of the vulva – caused, as in cervical cancer, by high-risk HPV infections – that are known as VIN3 (vulval intraepithelial neoplasia) and these cells had to be cut away. “We’d been seeing her but we hadn’t looked properly.”

Another young woman in her 20s, a smoker who took occasional drugs, presented after having had a vulval itch for two years and was also found to have VIN3 due to HPV infection, which had to be removed by surgery.

Simcock says vulval cancer is a rare cancer, with probably only about 10–15 cases a year in Christchurch, and the vast majority of all vulval cancers (95 per cent) are squamous cell cancers with the remainder being melanomas.

Vulval cancer is a cancer that is most common in older women but it can also be seen in young women. There are two pathways for vulval cancer. One is infection by HPV or wart viruses that many women are exposed to, but some get high-risk HPV infections that lead to pre-cancerous VIN, a condition that is more common in smokers and the immune suppressed.

The other is through a chronic and benign skin condition known as lichen sclerosus, which can cause an itch that Simcock says prompts many women to wash more frequently, thinking they must be dirty, which can make them even itchier. The cause is unknown, but it is associated with autoimmune diseases and about 1 in 20 women with the condition will develop a cancer.

Listen, look, educate, encourage

Simcock says the take-home messages about vulval cancer for nurses working with women is to listen, look, educate and encourage vaccination against HPV, which can reduce the risk of vulval, as well as cervical, cancer.

In 2012 there were 67 new registrations of vulval cancer and 14 of cancer of the vagina in New Zealand.

Fourteen women died of vulval cancer in 2012 and eight of vaginal cancer.

Like cervical cancer, a risk factor for vulval and vaginal cancer is HPV infection leading to pre-cancerous changes known as VIN (vulval intraepithelial neoplasia).

A chronic benign and progressive skin condition called lichen sclerosus can also predispose women to cancer of the vulva.

Further information

All gynaecological cancers

New Zealand Gynaecological Cancer Foundation
Aims to inform and educate community about gynaecological cancers with the aim of increasing survival rates. Has information on symptoms, statistics and personal stories and resources for health professionals. www.nzgcf.org.nz

Ovarian

Gift of Knowledge
Registered charity focused on raising awareness and reducing incidence in
New Zealand of genetic breast and ovarian cancer. www.giftofknowledge.co.nz

Ovarian Cancer Australia’s Symptom Diary
Downloadable tool that women can use to track and record four common ovarian cancer symptoms (pelvic abdominal pain, increased abdomen size/bloating, urinary frequency/urgency and feeling full after eating a small amount) over four weeks. http://bit.ly/1KQrjCd

Uterine cancer (including endometrial)

Cancer Research UK
Blog published in November 2015 on links between obesity and some cancers, including the ‘oestrogen connection’ between obesity and increased risk of womb (endometrial) and breast cancers. http://bit.ly/1TvzJ98